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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability.

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential.

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context.

Empowering programme

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says.

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains.

Feedback from parents

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do … she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before … as a mother of a Down syndrome baby – but for any mother … I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot … my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …”

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq.

News Archive

UFS takes lead in improving quality of training in economics in schools

2006-06-20

The fourth international workshop for trainers in the National Council on Economic Education’s (NCEE) outreach programme for Africa, Latin America, Asia and the Middle East will be presented in Bloemfontein from 18-24 June 2006.

“Because of the rapid success we achieved in the Free State with similar workshops in Economics education that were presented by the NCEE the past year, we have now invited representatives from education departments and universities of five other provinces to attend the international workshop for trainers,” said Prof Klopper Oosthuizen, lecturer at the University of the Free State’s (UFS) Department of Agricultural Economics and initiator of the cooperative agreement with the NCEE.

The UFS and the Free State Department of Education are the NCEE’s first partners in Africa who received this training. “The attendance of the five provinces and universities is the first step in the extension of the programme to the rest of the country,” said Prof Oosthuizen.

The NCEE is based in the United States of America (USA) and the workshop forms part of the council’s effort to improve the quality of the training of Economics teachers and lecturers across the world.

“South Africa is urgently in need of efforts to improve the integration of black people into the market economy. An understanding of how markets work is one of the pillars of democracy. Equipping young people with economic understanding and skills will help empower them for responsible roles as individuals and citizens,” said Prof Oosthuizen.

According to Prof Oosthuizen representatives from the education departments of the Northern Cape, Western Cape, Eastern Cape, KwaZulu-Natal and North West will also be attending the international workshop for trainers. Representatives from the Universities of Rhodes, of KwaZulu-Natal, North West and the Durban University of Technology as well as the Cape Peninsula University of Technology will also attend the workshop.

During this workshop teachers and lecturers in Economics will receive certificates.

Various subjects will be covered during the workshop such as world trade patterns, cost and benefits of free trade, exchange rates and international finance. The training will be done by representatives from the NCEE by using methods such as direct instruction and role play.

The NCEE is also in the process of training teachers and learning facilitators in the Free State in an effort to improve the quality of Economics classes in secondary schools.

“A group of 84 teachers and learning facilitators were trained in December 2005, 50 were trained in January 2006 and the last group of 40 will be trained at the UFS Main Campus in Bloemfontein from 26 June - 1 July 2006,” said Prof Oosthuizen.

During this seminar the teachers will be trained in issues such as broad social goals in an economy, economic decision making, government’s role in a market economy and fiscal policy. The training will also be done by representatives from the NCEE.

The NCEE has been working together with international partners since 1992 to strengthen their Economics teaching systems. They have already succeeded in increasing literacy in Economics at schools in the USA and more than 20 East Block countries. More than 1,5 million learners in the East Block countries have already been served by this initiative. Since 2004 the NCEE’s focus has moved away from the East Block countries to Africa, Asia, Latin America and the Middle East.

“Our future plans include strengthening the growing partnership between the UFS, the Free State Department of Education and the NCEE. We also want to establish a council and centres for economic education which will serve as an umbrella for our joint efforts,” said Prof Oosthuizen.

Media release
Issued by: Lacea Loader
Media Representative
Tel: (051) 401-2584
Cell: 083 645 2454
E-mail: loaderl.stg@mail.uovs.ac.za
20 June 2006

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